Telling Our Stories Makes The Disease Real


From cancer to COVID-19, our patient stories can help others take sickness and disease seriously.

One of my high school classmates is currently in the hospital fighting COVID-19. I haven't talked to him since we graduated 18 years ago, but thanks to Facebook, we're still connected. A few days ago, he posted a video from his couch saying he felt awful and had been diagnosed with COVID-19. "It's worse than the flu," he said. Later that night, his situation worsened and he went to the ER. A follow-up live video showed him in a scene I'm all too familiar with as a cancer survivor - lying in a hospital bed with IV poles, beeping machines and heart rate monitors all around him. His breath was labored, his face red, and he shared he hadn't slept well for days. Looking into his eyes, I felt bad for him and I heard his message loud and clear: "Take the coronavirus seriously."

I can't be his only Facebook friend who watched his vulnerable videos and then made a stronger effort to socially distance, wear a mask and wash my hands. They were very compelling. Before he shared his experience, I'd only personally known of one other person to get sick with COVID-19, and that person didn't seem to have the same extreme symptoms. I'm not in a "hot spot" area with a widespread outbreak — yet. Although I've been reading the statistics and supportive of public health efforts to contain the disease, it felt much more real when my classmate showed us how awful he felt through video. It also reminded me of the research presented at the National Colorectal Cancer Roundtable (NCCRT) a few years ago.

I was attending the NCCRT meeting both as a survivor and the Communications Director at Fight Colorectal Cancer (Fight CRC). The community had come together to launch a campaign called "80 by 2018" in an effort to get people screened for colorectal cancer - a preventable disease. The American Cancer Society presented research to explain the barriers that stopped people from getting preventive care like a colonoscopy or stool test, as well as what motivated the unscreened to get screened. The data found that when people had a personal connection to it - someone they knew had it - they were more likely to get screened. This drove us at Fight CRC to create awareness campaigns highlighting survivor and caregiver stories. Our stories helped colorectal cancer seem real, just like my classmate's COVID-19 videos helped the virus become real to me.

Not all survivors are alike, and I recognize that many patients prefer to keep their illnesses private. I can respect that and I realize sharing openly and vulnerably isn't for everyone. But, I urge and encourage all cancer survivors and caregivers to speak up in some way.

Write a blog. Post on social media. Join a nonprofit and get involved through advocacy. Let your family, friends and neighbors in on your news. Tell your story.

Your story could be the one that saves someone else's life. You could be the patient who helps someone believe the threat is real.

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